Friday, April 17, 2009

Bone Marrow Pathology

http://www.pathology.vcu.edu/education/programs/resident/NewSite/Marrow%204.pdf

This is a great interactive bone marrow pathology site!






For more information on Shwachman-Diamond Syndrome, please see Shwachman-Diamond America

Thursday, April 16, 2009

New Congenital Neutropenia Syndrome And Causative Gene Mutation Identified By Scientists

http://www.medicalnewstoday.com/articles/134370.php

New Congenital Neutropenia Syndrome And Causative Gene Mutation Identified By Scientists

"Our discovery will help facilitate genetic diagnosis in this newly defined group of severe congenital neutropenia patients," said Christoph Klein, M.D., Ph.D., Hannover Medical School, the principal investigator of the study. "Knowledge about the underlying genetic defect is an important first step in developing a targeted therapy."



For more information on Shwachman-Diamond Syndrome, please see Shwachman-Diamond America

Friday, April 10, 2009

Minimizing Infusion Anxiety

I.G. Living also has an article on minimizing infusion anxiety this month. They have it on their website. The Employment Law article is not on the site….

Thought I’d share this article, too. Minimizing Infusion Anxiety

http://www.igliving.com/web_files/A-M09_Anxiety.pdf






For more information on Shwachman-Diamond Syndrome, please see Shwachman-Diamond America

Immune Deficiencies and Celiac

Very interesting article that goes into how people with certain immune deficiencies may go with undiagnosed Celiac because the tests don’t always come out *normal positive* in people with certain problems/immune deficiencies. People with antibody defects or more extensive primary immune deficiencies may not have reliable results on celiac testing.

Since we have so many kids on the SDS list with antibody deficiencies, I thought I would post this! This is from the December-January 2009 I.G. living magazine

http://www.igliving.com/web_files/d-j09_Celiac.pdf




For more information on Shwachman-Diamond Syndrome, please see Shwachman-Diamond America

Complementary and Alternative Medicine: Surveying the Options

Since IG living is written for immune patients…. They have some good articles. I thought this was interesting since we often talk about this on the list.

http://www.igliving.com/web_files/a-s08_CAM.pdf

Complementary and Alternative Medicine: Surveying the Options






For more information on Shwachman-Diamond Syndrome, please see Shwachman-Diamond America

Article: Not Another Sinus Infection!

http://www.igliving.com/web_files/f07-sinus.pdf

Not Another Sinus Infection!

Tips on sinusitis for immune compromised individuals…..



For more information on Shwachman-Diamond Syndrome, please see Shwachman-Diamond America

Chronic Illness and Education: Helping Teens Soar!

Chronic Illness and education: Helping Teens Soar!

http://www.igliving.com/web_files/feat_a-s06_illness_educ.pdf

A great article to help teens do well in school!





For more information on Shwachman-Diamond Syndrome, please see Shwachman-Diamond America

Tips for the School Nurse: Getting to know PIDD

Tips for the School Nurse: getting to know PIDD

http://www.igliving.com/web_files/feat_a-s06_tips_nurse.pdf


An Article that might be good to give a school nurse.





For more information on Shwachman-Diamond Syndrome, please see Shwachman-Diamond America

Special Education Plans: Parents are the Best Advocates

http://www.igliving.com/web_files/feat_a-s06_spec_edplans.pdf

Special Education Plans: Parents are the Best Advocates

Sharing this article because we talk about it so much on the list! Goes into 504, IEP and IDEA Law…..





For information on Shwachman-Diamond Syndrome check out Shwachman-Diamond America

Insurance 101

http://www.primaryimmune.org/publications/book_pats/e_ch22.pdf

This is a GREAT resource!!!!! It goes into Insurance types.. group, COBRA, Individual Health Insurance, the uninsurable and the state help, high-risk pools for uninsurable folks, Medicare (all parts), Medicaid, State assistance programs, and State Children’s Health Insurance Programs (SCHIPs). I call it Insurance 101

It has a section called “The ABCs of health plans where it explains HMO, POS, PPO, Indemnity plan, etc… has a section to explain key parts of JIPAA with some tips for all insurance types and a glossary of insurance terms.



For information on Shwachman-Diamond Syndrome check out Shwachman-Diamond America

Inheritance Patterns/ Genetics 101

http://www.primaryimmune.org/publications/book_pats/e_ch15.pdf

a great “Genetics 101” that explains inheritance patterns-- the autosomal recessive pattern is explained on pp 5-6 and there are all sorts of numbers for those who like that. Also explains carrier testing, etc, etc…..






For information on Shwachman-Diamond Syndrome check out Shwachman-Diamond America

Lab tests -neutrophil, antibody, T-cell

http://www.primaryimmune.org/publications/book_pats/e_ch16.pdf

This is a great chapter on laboratory tests. It might be helpful for many of you, too. I find it helpful. It explains the lab evaluation of the immune system, normal vs abnormal lab values and then it goes into major categories of tests including: Lab evaluation for antibody Deficiency, Evaluation of cellular (T-Cell) immunity, evaluation of Neutrophil immunity, and lab evaluation of Complement






For information on Shwachman-Diamond Syndrome check out Shwachman-Diamond America